I'd appreciate your input on bilat mast

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nash
nash Member Posts: 2,600
Hi, ladies--I'd appreciate your input. I was diagnosed with ILC (2.7 cm) last month, had my lumpectomy last week, neg nodes, stage IIA. Will be doing chemo/rads/hormonal therapy.

I am being advised to have bilat mast/reconstruction due to high risk for local recurrence/new primary (age 39, strong family history of cancer, including mom w/stage IV bc). My ILC tumor was of an aggressive subtype (pleomorphic), and apparently that breast is also full of LCIS. The surgeon said she'd be comfortable leaving the breasts on if the LCIS/ILC was of the classic type, but since mine (including the LCIS)is of the pleomorphic variety, she's recommending the bilat mast. So is the oncologist, for peace of mind.

I don't want to do anything clinically imprudent, but I think I am willing to do "watchful waiting" instead of the bilat mast. The docs have given me that as an option.

When you were diagnosed with a new primary, did you have any regrets about not doing prophylactic mast the first time around? I am really struggling with the decision, and I'd love to hear your thought on the matter.

Comments

  • MargaretB
    MargaretB Member Posts: 1,305
    edited July 2007
    I was not diagnosed with a new primary but I wanted to say that when I was diagnosed in the right breast and they found calcifications in the left, that they weren't worried about right now, I didn't want to do the watchful waiting and opted for the bilateral. I also would have had to have a reduction on the left side and there was only so much surgery I could handle. You have to do what you feel comfortable with but I wanted to put this behind me as quickly as possible and didn't want to have to wait for the other shoe to drop.

    Good luck with your decision.

    Margaret
  • rubytuesday
    rubytuesday Member Posts: 2,248
    edited July 2007
    I can understand your reluctance. I wasn't ready to have a mast my first time around....however, when I developed a new primary, of course, the 'what ifs' and 'if onlys' set in. I chose a unilateral this time around.... Best wishes with a very difficult decision.
    BTW, all my tumors were in the same breast.
  • Rainenz
    Rainenz Member Posts: 93
    edited July 2007
    Hi I had Lumpectomy 1st time 10 yrs ago and a last yr when dx on other side went for lumpectomy again, however had to go back for a mastectomy as they couldn't get clear margins and there was DCIS as well as IDC. 1 year on am now paranoid about the original side and am going to talk to surgeon when I see him tomorrow about having it removed and then having a bilateral reconstruction.

    Good luck with your decision making. What ever you choose be true to yourself.
  • tos
    tos Member Posts: 376
    edited July 2007
    I had a lumpectomy 4 yrs ago and then this year was dx on the other side with a new primary. I decided after alot of thought and research to get a bilateral mastectomy. I also had a heavy family history and my daughter had just been dx w/bc stage III. Soon after we both found out we are positive for the same brca 1 mutation so I have no regrets and know I did the right thing.
    This is a very personal decision and I hope w/discussing this w/your docs and giving it lots of thought you come up with what you are comfortable with doing.
    Good luck to you,
  • LindaLou53
    LindaLou53 Member Posts: 929
    edited August 2007
    My concern about the "watchful waiting" approach would be the fact that Lobular cancer is so darn difficult to detect. You are fortunate that yours was found at an early stage with no nodal involvement. There is no guarantee you would be just as lucky the next time around however, and given your family history and pathology of this tumor that would personally make me think seriously about bilateral mastectomy.

    My own history no doubt biases my opinion but my case is an example of how Lobular can sneak up on you even with the best of care and monitoring. My first cancer in 2000 was IDC stage 2A in the right breast. There were no indicators of any problems in my left breast at all. After my lumpectomy on the right they did find LCIS but I had chemo/rads/tamoxifen and 3 month checkups with 6 month mammograms. I followed up religiously with all my appts for 5 years. Celebrated my 5 year anniversary from diagnosis in July 2005.

    In October 2005 at my 6 month checkup and mammogram they said the mamms looked great! But on physical exam an area of "thickening" was found on my LEFT breast. Long story short, the "thickening" turned out to be a 5.1cm ILC which was totally undetected by mamms or ultrasound. I had bilateral mastectomy and total axillary disection with removal of 23 nodes all positive along with rupture in the axilla. My onc has since told me that the lobular cancer was no doubt already in my left breast when I was treated in 2000 for the IDC, it just went totally undetected.

    At least if I were going to "watch and wait" I would insist on regular breast MRIs to give yourself the best chance of detecting anything new while it is still small. In 2000 breast MRI was not being done routinely. Standard mammograms can miss up to 50% of Lobular cancers and ultrasounds also have a similar track record.

    I know its a tough decision. I would put heavy weight on the clinical aspects of your young age, family history and tumor pathology however, as all put you at a higher risk of recurrence or new primary. Wish we all had a crystal ball to help make the right choices, but we just do the best we can.

    Best wishes for you,
    LindaLou
  • Sandra1957
    Sandra1957 Member Posts: 1,701
    edited August 2007

    Nash - I was 48 when I was dx'd with a 4mm ILC and was recommended a bilat from the start. My surgeon explained that I was very fortunate to have found such a small, classic type lobular tumor and that I would likely be looking at the same outcome for my right side 5 or so years down the path of which I may not be so lucky at catching it so small. My prophy. right had areas ADH and LCIS.

  • nash
    nash Member Posts: 2,600
    edited August 2007
    Thank you all for the input--I appreciate it.

    I am planning on MRI's every six months if I don't do the bilateral mast.

    I saw another oncologist yesterday who complicated matters by telling me to pursue genetic counseling and ovarian cancer issues even though I'm BRCA negative. He feels a 39 year old Ashkenzani Jew with breast cancer and a strong family history is a genetic issue even in the absence of a known BRCA mutation. So that's another issue I have to ponder in addition in what to do about my poor boobs.

    I think part of the problem with the bilat mast decision for me is decision overload. I have 3 different chemo recommendations from 3 different docs, the ovarian ablation issue, the ovarian cancer issue, the bilats, etc., Makes me want to run away and hide under a rock.
  • wildrose903
    wildrose903 Member Posts: 7
    edited August 2007
    Nash-
    single or bilateral mast. is a huge and very personal decision. You just have to make the best decision for YOU based on the info you have at the time - and don't second guess that decision afterwards!

    For me, after inital diagnosis of extensive dcis in left breast (mast best surgical treatment option), with further screening they found lcis in right. I opted for bilateral mast not only for preventative recurrance peace of mind, but also because of better "matching" reconstruction. No regrets - turns out I had idc in left, several spots of lcis in right.

    One piece of advice I'd offer you on overload issue is - take it one step at a time! In most cases you have some time before deciding post surgical treatments. The first and most important decision to make is which surgery... Sometimes the biopsy results from surgery will influence/determine additional treatments.

    Hang in there! Once you make the decision, it can be empowering to know you have a "plan of action" - and that you're moving ahead. All the best.
  • KeyWestEm
    KeyWestEm Member Posts: 16
    edited October 2007

    I had 2 lumpectomies 13 yrs ago with a very aggressice CA...12/28 positive nodes. Chemo and radiation followed. Now I'm 6 weeks out from bi-lateral mastectomy after discovering a tiny "deep" tumor. I'm so sad over losing my breasts and particularly nipples, that right now, if I had it to do over again, I'd choose to keep my nipples and die sooner, rather than lose them and live forever. I'm sure (and by that I mean "I hope") this feeling will lesson as time goes by, but just be aware that you may feel this way, especially if your nipples are your sexual sweet spot like mine were.

  • nevaeh
    nevaeh Member Posts: 85
    edited October 2007

    I read somewhere on this list that nipples can be saved.  You may want to look into it.

    Wishing you well.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2007

    Nash--from someone else who is doing the "watchful waiting" routine, I can understand your anguish about the decisions you're facing. I don't have ILC, but I was diagnosed with LCIS 4 years ago, had lumpectomy, take tamoxifen, and am very closely monitored by mammos alternating every 6 months with MRIs.  The good news is my mom had ILC--not sure if it was stage 1 or 2, but negative nodes--is now coming up on 21 years of survival without a recurrence (had lumpectomy, radiation, and tamox) and doing well at 78 years old.  I went to a seminar on cancer and genetics last year where the counselor said they were now recommending that anyone that tests negative be retested in 6 months, as sometimes the results are not definitive the first time.  She said they have so many new enhancements, the tests are being updated every 6 to 12 months now. With your family history, heritage, and young age, you might want to consider retesting or at least talking to a genetic counselor again.
     Recently my MRI showed 3 "spots" that docs (rad, onc, gyn) all feel are false findings, since nothing showed on f/u US and previous 2 mammos.  I'm trying hard to trust in their knowledge and expertise, but I still worry.  I go for another MRI and mammo in March.  I've been thru the ovarian cancer scare--I had a large ovarian mass that turned out to be multiple cysts which ruptured--ended up with a total abdominal hysterectomy, but fortunately everything was benign.  Feel free to PM me if you'd like.
  • GreenHeron
    GreenHeron Member Posts: 85
    edited November 2007

    Hi:

    I did the lump/chemo/rad;  then had a fals alarm lump the following year.  At that point, I finally did do the genetic test, ended up with BRCA2 (no family history whatsoever).  The team met and decided I was large breasted with very dense breasts and that I'd be constantly checking out stuff and hard to monitor...and even if they HADN"T said that, I never ever wanted to do another false alarm.  I never want to do chemo /rad again.  To me, so what if they get it early, I still have to deal with it all.  And what if they miss it?  Even with all the MRI's in the world...???  For me, the bilat was a no brainer, and 2 1/2 years out, I'm STILL GRATEFUL I made that decision.  I've never, ever, ever, even duirng reconstruction challenges, regreted it for one tiny second.

    Just me, I know. 

    It is a very personal choice.  Listen to all of us, then ask your own soul.

    Wishing you a long healthy life,

    Flashdif

  • makaryne
    makaryne Member Posts: 30
    edited November 2007

    Diagnosed August 2006, lumpectomy September 2006. Did the chemo, rad thing October - April 2007.  After follow up MRI; Mammo found 7mm, and follow up, follow up tests recommended more follow up, I opted for a bi-lat. mastectomy.  It is a very personal decision but I do not regret it for a second.  The worry before each test and waiting for the results and the idea of having to live like this for the next ten years was what tipped the scales in making my final decision.

    As others have already indicated, you have to do what is right for you.

    R

  • kimmie39
    kimmie39 Member Posts: 319
    edited November 2007

    If I had a masectomy the first time I wouldnt have it AGAIN, Yes I regret it.,

  • motheroffoursons
    motheroffoursons Member Posts: 333
    edited November 2007

    I would like to comment on the saving nipples issue.  My surgeon told me they used to transfer them to another part of the body, and after reconstruction transfer them back again.  However, he said they did not realize it then, but they were often transferring cancer cells back to the breast.

    In the realm of life, nipples are not that important.  Forget them.

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